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Characteristics of Health Care Settings Where Adolescents and Young Adults Receive Care for ALL

  • Julie A. Wolfson
  • , Allison C. Grimes
  • , Michelle Nuno
  • , Charlotte L. Kerber
  • , Subhash Ramakrishnan
  • , Melissa Beauchemin
  • , David Dickens
  • , Jennifer M. Levine
  • , Michael E. Roth
  • , Michele Scialla
  • , Wendy Woods
  • , Sarah Vargas
  • , Koh B. Boayue
  • , George J. Chang
  • , Wendy Stock
  • , Dawn Hershman
  • , Emily Curran
  • , Anjali Advani
  • , Kristen O'Dwyer
  • , Selina Luger
  • Jane Jijun Liu, David R. Freyer, Lillian Sung, Susan K. Parsons
  • University of Alabama at Birmingham
  • University of Texas Health Science Center at San Antonio
  • CureSearch
  • University of Southern California
  • University of California at Davis
  • Columbia University
  • University of Iowa
  • Children's National Medical Center
  • University of Texas MD Anderson Cancer Center
  • UnityPoint Health
  • University of New Mexico
  • Alliance Cancer Care Delivery Research
  • Alliance Leukemia
  • The University of Chicago
  • SWOG Cancer Care Delivery Research
  • Alliance Leukemia
  • University of Cincinnati
  • SWOG Leukemia Committee
  • Cleveland Clinic Foundation
  • University of Rochester
  • ECOG-ACRIN Leukemia
  • University of Pennsylvania
  • Alliance Community Oncology
  • Illinois CancerCare
  • Children's Hospital Los Angeles
  • University of Toronto
  • Tufts Medical Center

Research output: Contribution to journal › Article › peer-review

7 Scopus citations

Abstract

PURPOSE: Individuals diagnosed with cancer between 15 and 39 years (adolescent and young adult [AYA]) face unique vulnerability. Detail is lacking about care delivery for these patients, especially those with ALL. We address these knowledge gaps by describing AYA ALL care delivery details at National Cancer Institute Community Oncology Research Program (NCORP) (sub)affiliates by model of care.

METHODS: Participating institutions treated at least one AYA with ALL from 2012 to 2016. Study-specific criteria were used to determine the number of unique clinical facilities (CFs) per NCORP and their model of care (adult/internal medicine [IM], pediatric, mixed [both]). Surveys completed by NCORPs for each CF by model of care captured size, resources, services, and communication.

RESULTS: Among 84 participating CFs (adult/IM, n=47; pediatric, n=15; mixed, n=24), 34% treated 5-10 AYAs with ALL annually; adult/IM CFs more often treated <5 (adult/IM, 60%; pediatric, 40%; mixed, 29%). Referral decisions were commonly driven by an age/diagnosis combination (58%), with frequent ALL-specific age minimums (87%) or maximums (80%). Medical, navigational, and social work services were similar across models while psychology was available at more pediatric CFs (pediatric, 80%; adult/IM, 40%; mixed, 46%-54%). More pediatric or mixed CFs reported oncologists interacting with pediatric/adult counterparts via tumor boards (pediatric, 93%; adult/IM, 26%; mixed, 96%) or initiating contact (pediatric, 100%; adult/IM, 77%; mixed 96%); more pediatric CFs reported an affiliated counterpart (pediatric, 53%; adult, 19%). Most CFs reported no AYA-specific resources (79%) or meetings (83%-98%).

CONCLUSION: System-level aspects of AYA ALL care delivery have not been examined previously. At NCORPs, these characteristics differ by models of care. Additional work is ongoing to investigate the impact of these facility-level factors on guideline-concordant care in this population. Together, these findings can inform a system-level intervention for diverse practice settings.

Original languageEnglish
Pages (from-to)491-502
Number of pages12
JournalJCO Oncology Practice
Volume20
Issue number4
DOIs
StatePublished - 1 Apr 2024

Keywords

  • Adolescent
  • Child
  • Delivery of Health Care
  • Humans
  • Neoplasms/epidemiology
  • Oncologists
  • Surveys and Questionnaires
  • Young Adult

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